In the story, the emperor was clearly naked. No clothes, not a stitch, wearing only a crown. This made it fairly easy for the uninitiated, the child unaware of the social implications of dissent, to point out the fact. But what if the emperor is sometimes lavishly clothed, at others, wearing stained sweats, and, on occasion, out and about utterly stark? Who would have the confidence to be sure that their eyes were not lying? And who, only having seen the monarch richly attired, would believe the tales that others told about him?
That is the challenge we face with the Ray Graham Association. Once upon a time, as some have attested, the organization was run by people who were well qualified and well intentioned, and who truly tried to fulfill its mission to help people with disabilities live richer, more independent lives. Even today, it seems to us that for those requiring primarily custodial care, the most severely disabled, this organization does a good job in providing care in as homelike a setting as might be possible without one-on-one full time personal attendants.
But according to the statistics, 86.7% of people labeled cognitively disabled are in the “mildly disabled” category (http://mn.gov/mnddc/parallels2/pdf/80s/82/82-PMR-ARC.pdf). Of that group, many can be transitioned, with proper support, into lives that are independent, requiring only minimal support. These people are as acutely aware of their hopes, dreams, preferences, and anguish as any of us in the “non-disabled” community. And while Ray Graham was undoubtedly a vast improvement over, say, the horrors of Willowbrook, “at least it’s not Auschwitz” is hardly an acceptable standard. Will and his family were assured that he would receive training, education, and support to allow him to pursue the life we all hope (and deserve), one that embodied and reflected his tastes, his goals, his potential. And that did not happen. It didn’t happen by design, because the Ray Graham Association, like many other organizations of this type, benefit financially by failing to fulfill these promises. Rather like for-profit health insurance companies who profit by denying us care, there is an intrinsic contradiction in their stated purpose and the fiscal reality.
In a culture where working people are viewed as “human resources” (is there a more grotesque term possible? We’re in the same category as coal and bauxite), it’s not surprising. It’s not inevitable, though, and it’s not unfixable. We need to demand that there is real oversight of these organizations, these private agencies that receive the majority of their funds from public coffers. It doesn’t exist – unless you are murdered by your agency, your complaint, as an adult, is unlikely to get treated with any urgency. When the Ray Graham Association kicked Will off the list of people to be transitioned to the flexible Medicare Waiver funding, they lied about the reasons and then told us, confidently, that we had “no recourse and no appeal.” They were confident with good reason. Despite our documentation, despite our witnesses, despite testifying in front of an Illinois House Subcommittee hearing, we’ve yet to succeed in holding those who abused, neglected, and exploited him accountable. People who know the truth are sometimes afraid to tell it. People with disabilities, their friends and family, fear angering those in positions of power in the disability services community – and with good reason. Their treatment of Will when he was dying illustrated that they are quite willing to act vindictively. But fear will perpetuate the tragedy; only by speaking the truth and taking action for change will the system change, and the destructive parasites feeding off public money at the expense of some of our most vulnerable citizens be removed.
Will, acutely aware of what had been done to him and the reasons behind it, displayed breathtaking courage at a time when he knew it was likely he had less than a year to live; already in pain from the cancer that had spread to his liver and bones. If this man, struggling with his own challenges and literally dying, found the courage and strength to fight for himself and others we can hardly justify doing less.
So if you are the big tree
We are the small axe
Ready to cut you down (well sharp)
To cut you down